Nothing Compares 2U

Nothing Compares 2U

For the past week I’ve been saying it’s time to shave my head again. I’ve also been waking up every morning with the song “Nothing Compares 2U” by Sinéad O’Connor stuck in my nugget.

Coincidence?

I’ll let you decide.

Oh, and fun fact: the internet tells me that song was written by Prince. A lot of times I read a fact like that and will be like, my entire life is a lie. This time, though, I absolutely hear it.

This morning Dan and I went to McDonald’s (curbside) to get my favorite chemo breakfast. I’m not overly proud of eating fast food this frequently. But on chemo, you do what you gotta do.

Plus, I put the restaurant app on my phone and they’ve been doing double points during breakfast hours. I’ve earned a free, large frappe. It’s caffeinated dessert at 9 am. Scratch that. It’s a LARGE caffeinated dessert at 9 am. And all I had to do to get it was eat there like four times this month.

And I can hear my haters now, “But Emily, you’re on a fixed income. You need to raise money again. Is eating out wise?”

To which I respond. “Clearly you know nothing about being poor or having cancer or being disabled or having a caregiver go a whole year without proper meds because insurance. But if you’re concerned, feel free to send me a gift card.

Besides, if my food stays down, so do the really pricey meds. My frappe is tasty AND frugal, baby! Tuck that away for when *you* get cancer. You’re welcome.”

Welp. It’s Thursday, and I have a lot to get to today: run Chad, shave my head, shower, fold a basket of laundry, update my Amazon list, and maybe play some Animal Crossing. 

Reminder: don’t say that “must be nice” or whatever unless you would also like to do all of that with brain cancer.

This is My Permanent Record

This is My Permanent Record

In case you were born yesterday, I’d like to preface today’s post by announcing that the permanent record doesn’t actually exist. It’s a lie. Like Santa Claus and his naughty list. Like being told that sitting too close to the TV will make you go blind. Like eating turmeric will prevent brain cancer.

The only permanent record we really have is the legacy we leave. This blog is my legacy, and from time to time I like to state things for the record.

This is one of those times.

After today’s continuation of the January 6 hearings and the testimony of Cassidy Hutchinson, I’d just like to point out that I knew.

I fucking knew.

I wasn’t the only one who knew, of course, but I don’t speak for anyone but me.

If you’ve read even the first few chapters of Who You Gonna Believe (it’s still free, btw) you might understand what I’m saying. But in case you haven’t read it and don’t plan to, allow me to explain *how* I knew, why I unequivocally denounced Donald Trump from Day One, and why I cut ties with people who defended him.

You see, “Rodney” (not my ex-husband’s real name) is Trump, but on a tiny scale. The differences are easy to see, but then so are the patterns.

Let me put it another way. Donald is a full-size violin and Rodney is a quarter-size violin. If you learn to play a scale on a quarter-size violin, that knowledge is transferable to the full-size.

The full-size violin has an army and political power and thinks he’s better than God. The quarter-size violin has a penis and a job in PR and thinks he can tell you how to act and what to feel.

Ahem. Not sure what made me think of that song.

So anyway, yesterday I said I wasn’t going to talk about the hearings here. And I mostly still mean that. I have no intention of rehashing details just so someone can “debate” me in the comments.

I just want to state very clearly and for my permanent record that:

The January 6 hearings might actually be the reason I’m sleeping better at night and not Animal Crossing.

People smarter than me are finally laying bare the entire truth.

The Good Stuff

The Good Stuff

Today wasn’t half bad. I’ve been sleeping well the last couple of nights. Of course, I’d like to know why that is so I can bottle the good stuff for later. But all I can do is speculate and marvel that I’ve woken up after about 9 hours of sleep in the same position I fell asleep two nights in a row.

Wut? I know!

I’m just going to go with it. But I have a couple of theories: I’ve been playing so much Animal Crossing during the day, I’m just that tired. Or, I’ve been playing so much Animal Crossing I don’t have time to think about how everything sucks.

Kidding. Sort of. I mean, I’ve been playing ACNH a whole heckuva lot, but can that actually be helping me sleep better?

It’s kept me from posting here for a couple of days. Of that I’m sure.

Another thing that’s got my spirits up today is Dan told me there’s going to be an impromptu 1/6 hearing tomorrow. I’ve only watched the last two, but I can watch them and forget for a second I have cancer.

No worries, though, I don’t feel like discussing them here. If the facts didn’t grab you before, they aren’t gonna grab you now. And I’m not currently accepting responsiblity for what anyone else thinks about anything.

Our robot vacuum is working again after a couple of days of me saying to it, “Go home, Chad, you’re drunk!” Yes, we named the vacuum. I think I mentioned it previously, but Chad is so much easier to say than robot vacuum.

Anyway, he was leaving his charging dock and making a left into the bedroom wall and the app was giving me “zone error” notifications. The TV remote in my chemo room seems to get him a little confused. And I don’t know if I told y’all this, but I’ve been playing ACNH. Like, a lot. On the TV.

Once when Dan was getting me all set to play, he pressed the power button on the TV remote and Chad jumped off his dock, turned 360 degrees, and docked again.

*shrug*

When we move, Chad won’t live in my chemo cave, and hopefully I’ll have a different TV anyway. For now, though, it’s a little bit of a struggle. I need him to do his job three times a week because it’s shedding season. Chad will choke if the fur situation gets out of hand.

Okay. That’s all I’ve got for now. Tell me how cute my ACNH character is in the comments, consider giving $5 to our GoFundMe, and have a good week.

Emily Plays Nintendo

Emily Plays Nintendo

Today on Emily Plays Nintendo: All my island residents on Animal Crossing: New Horizons keep bringing up how long I’ve been gone.

“What’s it been, Swimily?* Five, six months?” they all tease.

Yes, jerks. It has been that long. Thanks for bringing it up. At first, I thought I wouldn’t feel well enough to play for a couple of days. But winter and spring were hard. There was chemo. There was puking. There were shingles. There was a sinus infection. There was a sick dog. There was pain. And the hiatus was half a year long.

What got me back on the Switch this week, though, was the game Fall Guys. Tuesday it was added to the Nintendo (and other) stores for free, and one of the art YouTubers I watch who is “obsessed” with the game got me interested. She includes the occasional stream clip in her vlogs.

But I’d never done anything more than look at the price and say to myself, “Nope. Not right now.”

Well, for once it paid to be poor. Because a couple of years after its release, it ended up on the Switch AND free. Izzy freaking loves the on-screen chaos of Fall Guys, by the way.

Naturally, though, Fall Guys crashed for me on launch day after the first round. So I opened up ACNH and I’ve played it for 6 of the last 24 hours. That game is so stinking cute and relaxing.

I did get in a few minutes of Fall Guys today too, but my sessions are relatively short. First, I suck at it because I’m a total n00b. Literally placed last because I couldn’t jump. Second, it’s a fast paced game, and I will get super tense and extra hurty (wow, that’s an actual word?) if I play too long.

Animal Crossing New Horizons screenshot of character in rendeer costume. There is snow on the ground and a snowman beside her.

Anyway, I was scrolling through my in-game screenshots, and the last ones I’d taken on Animal Crossing? There was still snow on the ground and my character was dressed up in a reindeer costume. Yeah.

* Switch plus Emily equals Swimily. Now you know the secret to my character-naming skills.

My Favorite Chemo Breakfast Revealed

My Favorite Chemo Breakfast Revealed

All I’m saying is that I have never been done wrong by a bacon, egg, and cheese biscuit with a small caramel frappe. They never taste weird, and they never make a second appearance. If you know what I mean. That’s it. That’s my favorite chemo breakfast.

Yesterday we took Boomer to the vet to have bloodwork done and see if his meds were helping. They are! His elevated liver enzymes are slowly improving. Plus, he is on three different medications, and none of them appear to be causing any negative side effects.

In other news, it was freaking hot here yesterday. I genuinely think I got heat stroke while walking from the car to the vet — so, like 90 seconds, tops — from the closest accessible parking spot. It was 93 °F yesterday, and it’s supposed to be 99 °F today. 

(Friendly reminder to never, ever say something shitty or leave a passive-agressive windshield note to ANYONE using an accessible spot. You don’t know what you don’t know.)

My body doesn’t do temperature regulation anymore. I don’t know if it’s the tumor or the chemo (maybe a little of column A, a little of column B) but there’s a range of like 3 degrees where I am able to live. 

We have AC, but aggressively check on people who don’t. Just because your Great Aunt Ethel survived the summer of ’77 doesn’t mean she’ll be fine.

I got a phone call from radiology yesterday saying they needed to reschedule my MRI, because I had been scheduled on a regular magnet but I need a more powerful one. 

Which reminds me…

I also learned during the related screening question last week that I do have a clip where my gallbladder used to be.

I answered no to the question, and the nurse said jovially, “You lied to me! You *do* have a clip.” Then he read the surgeon’s medical notes back to me.

“No one ever told me! I was under anesthetic! All I know is there was an ‘ectomy’ and I was glad to see that effer go.”

(I didn’t say ‘effer’ or the actual expletive. I just threw that in for flavor. But it was true to the sentiment of the exchange, which I cannot remember verbatim.)

Then he asked if I had both of my kidneys, and I was like, “As far as I know. But who knows what happened during that gallbladder surgery?”

“True. I hear they fetch a good price if you know a guy.”

If anyone ‘knows a guy’ it’s a surgeon. Am I right?

And lastly, all this talk of price fetching reminds me that we have received 12.8% of our fundraising goal for the renovation.

It’s Not the Cancer, It’s the Chemo

It’s Not the Cancer, It’s the Chemo

I’m having a day. I was on the fence about writing about it, because the part of me that is severely chemo depressed right now is like, why expend the energy trying to be understood? This is unexplainable. You will waste time and precious energy and still no one will understand.

Maybe I just need the thoughts out of my head and into The Void.

It’s Friday, so it’s sheet washing day. I got the fitted sheet on the bed. Then I rested and put the top sheet on the bed. I’ve still got pillow cases and the quilt to go.

But I had to stop and take a break and stare at the spinning walls for 30 minutes while wallowing in self-pity about how difficult everything is. Yes, Dan will help me if I ask.

But holy shit, I am tired of having to ask for help with ev-uh-ree-thing. And sometimes I have to prove to myself that,  yes, I do actually need the help. Been a gaslighting recipient one too many times I guess.

While my pulse was racing, it occurred to me that this is maybe something I can use when talking to my doctors and nurses.

“Does your pulse usually run high?” (Every visit starts with vitals.)

Yes! Fucking yes! Every time I’m in here you ask me that. It’s always like this!

But it occurs to me that I should be spelling it out for them. “I walked ten feet with a mobility aid, and my pulse is as high as if Healthy Me had completed 30 minutes of jogging. Now do you fucking get it? This is what fatigue level 7 looks like. Stop pretending those god damn numbers from 1-10 mean anything to you!”

But I am not actually mad at the medical staff. They are caring. I am just mad at life. At how unfair literally everything is.

I’m tired. I’m exhausted. I’m fatigued. But no one has any idea what those words mean. Because they’ll say them right before they binge watch a TV series while SITTING UP and maybe even walking to the kitchen for a snack.

I know this is just how I feel some days. I don’t need a pep talk. Thanks anyway.

Donate

Evusheld Covid-19 Preventative and More Cancer Stuff

Evusheld Covid-19 Preventative and More Cancer Stuff

I’ve got a lot of cancer things to talk about in today’s episode, including getting the Evusheld Covid-19 preventative, scheduling #AllTheVaccines, scheduling my next MRI, and a pleasant prednisone surprise.

If you’re following along at home, you might remember that I rescheduled last week’s oncology appointment to yesterday afternoon. I thought it was going to be boring and routine, like a meeting that should have been an email. But, clearly, my doctor and I discussed a lot of stuff.

First up: Evusheld. It’s another preventative for Covid-19 that’s available for the immunocompromised. My doc said I qualified for it and recommended it. So I got Evusheld this morning at the cancer center.

My appointment was scheduled for 7:00, but I didn’t get to leave until about 9:00. The stuff has to thaw, and then you have to hang around for an hour for observation in case you have an allergic/adverse reaction.

There are reasons I set early appointments. Empty waiting rooms are one.

I picked out a shirt specifically for getting the two shots in my arms only to be told they were administered in the ass and be asked if it was OK if a new nurse watched.

The more the merrier. When you have cancer, I think you inevitably learn to leave your inhibitions at home. Next to the box of vomit bags probably. I don’t know.

So I came home with two Tweety Bird Band-Aids—one on each cheek. Cute.

As for side effects. I’m really tired now, but I don’t know if it’s the Evusheld, two days in a row getting dressed and leaving the house, or being up this morning at the butt crack of dawn. Maybe all of the above?

Next, my doctor and I discussed vaccines. I need my second Covid booster and my second shingles and pneumonia vaccines. (Apparently I *just* missed getting the new single-dose pneumonia vaccine. Curses!)

It’s a lot of shots, and getting them requires finely orchestrated scheduling. There are requirements for spreading them out, but also? Insurance. God, I hate insurance. 

The shingles vax isn’t covered because I’m too young, and the first one cost me $200 out of pocket because I’m not 50 yet. I expect the next to be at least that much. Literal and figurative gouging. If gas prices concern you, congratulations I guess.

It’s worth $400, though, because I had shingles a few months ago (thanks, cancer!) and I hope I never have them ever, ever again. 

I’d rather have another brain surgery. No lie.

Anyway, that left the perfunctory chemo questions and the MRI questionnaire that takes FOREVER. There was a new nurse observing that too, and when I responded no to whether I was claustrophobic, she looked at me, shocked, and said, “YOU’RE NOT?!”

This’ll be number 22 or 23. I’m over it, folks. Besides the new hospital machines are like Cadillacs compared to the tiny, dark mobile unit I was shoved into for MRI #1. I had to sing Jesus Loves the Little Children to myself to get through that first one without crying.

Brain MRI pro-tip: always ask for the washcloth over your eyes.

That MRI is scheduled for the last part of July. There will be some scanxiety but it has nothing to do with the process and everything to do with wondering about the results.

Lastly, surprise! I officially didn’t gain any weight* while on prednisone. My last three appointments only varied by like a pound. I’m still fat but not fatter, and my dexamethasone clothes from 2017 still fit like a giant garbage bag. (Thanks, chemo?)

That’s all for now. I need a nap.

*I don’t care how much I weigh. I just can’t afford new clothes right now. Did I mention Shingrix is like $200 a pop? 

Kombucha Kombusted: Trying Kombucha during Chemo

Kombucha Kombusted: Trying Kombucha during Chemo

I tried kombucha during chemo for the first time this weekend.

What is kombucha? Kombucha is fermented tea and sugar. It’s bubbly with a little bit of alcohol. Though you can also find hard kombucha, that’s not what I was after.

I’d just like to say that the “do not shake” warning on the kombucha bottle needs to be featured more prominently than the hippie vibes. The stuff settled on the bottom of the glass bottle just screams “shake me!”

Sunday was my first time trying the stuff. I needed probiotic replacement and adventure, so I looked up if it was safe for cancer patients. 

The alcohol content is pretty low (like .5% or something) and the cancer center was non-committal, only saying that its sourness might upset chemo tummies.

But the grocery store had a ginger variety. Because ginger is good for nausea, I bought some. For science.

My experience: It wasn’t terrible, but it also wasn’t good. Probably won’t buy it again. It helped with my stomatitis, which I wasn’t expecting, but so does yogurt. And yogurt tastes better.

(By the way, I’m trying a new chemo regimen where I do 5 days on temozolomide, 2 days off. Lather. Rinse. Repeat. I tried the kombucha on one of the off days. For anyone else on chemo who wants more specifics, ask me your questions in the comments.)

Oh, have I ever mentioned that going from “shut up and take these antidepressants because you don’t know anything” a few years ago to “only you know your body; develop your own chemo plan” has given me some serious whiplash?

I’m appreciative of the respect I get from my oncologist. But I’d say my past medical trauma has left some scars. And sometimes I lack confidence when it comes to weighty medical decisions, like how to treat brain cancer.

That’s not to say I’m doing this all on my own. Just the parts about how much poison I can swallow before I sink into crushing depression.

The part of me that wants to not take chemo again—ever—is getting pushier all the time. But then there’s the part of me that’s like, “Well, life is pretty cool. Even if it makes me puke.”

I digress, so I might as well just shift gears from the kombucha during chemo thing completely.

While we were at the store picking up our curbside grocery order, the order with the kombucha in it, Mom texted me some pictures of the contractor’s prep for excavation. They are tearing up her idyllic back yard to make our basement entrance. 

Sorry, Mom! 

But every step forward takes a little bit of stress off. I could do with less stress, you know? Especially since my Zentangle stuff is currently packed away.

So when do we move in? Dunno. I’ve watched too much HGTV to expect we’ll actually be moved in by the end of 2022, but that’s our hope. 

Anyway, everything *is* headed that direction, and for now that’s more than enough. You can scroll through the updates on my GoFundMe for additional details and see where we’re at on our fundraising goal.

We also celebrated—and by celebrated I mean happened to remember—Izzy’s Gotcha Day on June 9. So have a gratuitous cat photo.

She really loves how little I move around on chemo. It means she can sleep all day undisturbed.

Lastly, here’s a picture of Boomer lazing under Hal, our linden tree, with Pipsquatch. We all miss the shade of the giant maple tree that was taken out by a tornado a couple of summers ago, but Hal is growing up nicely.

Large black dog lying in a landscaped area next to a concrete statue of Bigfoot

Hope your week is off to a good start. I have to put on real clothes for an oncology appointment, so, like, bye and stuff.

Second Breakfast

Second Breakfast

WARNING: This post isn’t about any “second breakfast” Peregrin Took ever ate.

I tried to be a good patient and have oatmeal and a protein shake for breakfast yesterday morning. I even fetched the food from the kitchen myself and brought it back to bed. 

But about halfway through, I started the reverse paristalsis panic.

(That’s your signal to stop reading if you’re a sympathetic barfer.)

My jaw got tight, and my salivary glands kicked into overdrive. I felt acute pain at the top of my stomach, and I could only process one overwhelming sensation: acridity.

“HELP!” I gargled, choking on the flecks of processed oats that stuck to the back of my throat on re-entry.

“What do you need?” Dan shouted while getting out of his chair. I didn’t answer. Couldn’t answer, technically. But I didn’t need to. The sound is distinct.

“Oh… 

“C’mon, Boomer. Let’s check on Mom.”

I have barf bags right by the bed, but I wasn’t fast enough. The first heave was not well contained. There were oats and chocolate flavored plant protein on my chin, my shirt, my pajama pants, my right leg, and my fitted sheet. 

(I buy what’s cheapest at the time I’m shopping, but these OWYN things are palatable under normal circumstances–no artificial sweeteners, which I despise. Just saying. It’s not the food’s fault.) 

I call this set of sheets my chemo sheets now.

The first couple of days back on temozolomide after a break are the worst, by the way. My body will do its best to recalibrate, but things will be sketchy the first week or so.

Because of this, I’ve learned to take morning medications well in advance of breakfast. After all, Medicare doesn’t pay to replace the pills you barf up. 

And also, have you ever tried to get a “controlled substance” filled a few days early?

But that’s a story I don’t feel up to writing, so back to this one.

“Friday is sheet washing day anyway,” Dan said. “I’ll get these going.”

So this might be redundant, but, um, yesterday didn’t start off all that great. However! Mom texted me that there was a giant shower in her driveway. And thinking about how one day I’ll be washing the Second Breakfast off without worrying about slipping and falling in the shower made me feel a little better.

This beauty is a lot like the shower that was in my hospital room at Barnes after I had surgery, and I managed that safely. Even with fresh staples in my head. So to say I’m ecstatic about seeing those handrails is an understatement.

P.S. If you’d like to help us cover some of the costs of the remodel, you can donate or just tell someone about this GoFundMe campaign. 

Another Round of Chemo

Another Round of Chemo

I started another round of chemo last night. I used to keep track of these things by counting the day and the round, but that was back when I thought chemo was a finite thing. Now it’s indefinite. I have no idea how much of this crap I’ve swallowed.

My oncologist was hoping I could take the temozolomide every day, but my body has been pretty adamantly saying “hell no!” to that. So I take it when I can tolerate it. 

At the moment there’s a lull in other important things that need to be done, so I’m on it again. Being on a break from it feels good at first, but then the anxiety starts to build.

Ever had anxiety over an exam you didn’t prepare for? It’s like that, only you also lie awake at night wondering if not taking the poison is adding to or subtracting from the number of days in your life.

Sorry, I don’t mean to be morbid. But I also don’t mean to have brain cancer.

Screenshot of Hospital Hub article titled: "Bankruptcy the norm for American cancer patients as insurance companies reject claims"

Anyway. New round. It coincides with a story about my insurance battles that recently went live on Hub Publishing.

The UK is about to give up the NHS for an American model of healthcare, and if you’ve known me for a while, you probably also know that I fancy myself a cautionary tale.

I’ve all but given up on the US doing anything about our healthcare problems. We are either in total denial, we enjoy watching people suffer, or—and this seems most likely—some disturbing combination of both. 

The UK, however, maybe you’re open to reason? Maybe you can reverse course or at least prepare for what’s to come?

Don’t be like us. Save yourselves from for-profit healthcare models. No one should fight insurance companies when they’re sick. I don’t care if it’s cancer or the common cold. 

No one should be bankrupted for wanting to be get better. For trying to live.

No. One.

So I’m not going to be up to doing a whole lot today. With one dose of temozolomide, I’m already feeling the fatigue. And I’ve got things like eating and bathing I need energy for. 

I will plug my fundraiser, because that’s the American way. Would be delightful to reach $1k this week. Work has started at mom’s. Some of the framing is up and the building permit is posted in the window. 

For now, I’m going to watch something relaxing on YouTube. I’ve really been into antique furniture restoration videos lately.

I’ll see you all back here later. 

P.S. I’m automatically sharing new blogs on social media sites I’m not using much. So if I don’t respond elsewhere, that’s why. I do try to keep up with comments here, but I’m slow.

Pin It on Pinterest